We're All Allowed Bad Days....

After some off-blog feedback from my last post (Don't freak out....it was just a grumpy day), I realize that perhaps I sounded angry at the hospital or at Andrew's course of treatment. I'd like to clarify that in no way was my mood yesterday in any way related to misgivings about his care.....we have none. We are confident that he is getting the best care possible, and that the doctors are exploring all potential issues and treatment options, both within the hospital and without. My frustration yesterday was due to Andrew's bad day, my own fatigue, and a month's worth of missing his personality.

The other possible misconception I've noticed recently is the idea that the doctor's "don't know" what's going on with some aspects of Andrew's condition. For instance, if he has a high heart rate, I might say that they have no idea why his pulse is so high....this isn't entirely accurate. The real problem is that there are so many factors involved in his disease, it's often difficult to tell which factor is causing the problem at any given time. When it matters, the doctors run the appropriate test (x-ray, ultrasound, CT scan, blood test, mucus culture, etc.) to determine the precise issue. When it doesn't particularly matter, or the issue is a known and/or expected side effect, they treat it and move on. In those cases, they chalk it up to one of the following known issues....I've left in the medical terms for efficiency:

• 95% left-side diaphragmatic hernia
• severe pulmonary hypoplasia
• pulmonary hypertension
• intestinal malrotation (and corrective surgery)
  
• compressed right bronchus
• hyper-inflated left lung with decreased vasculature
• bronchospasms
• gastro-esophageal reflux
  
• long-term ventilation
• artificial nutrition
  
• narcotic addiction
  
• extended steroid use
• urinary tract infection
• staph and steno bacteria colonies
  
• muscle wasting from long-term paralysis
• I'm sure I'm forgetting several issues, but we can stop there
  

Perhaps I haven't helped my cause by pointing out everything that's wrong. I'm not sure exactly what my motivation was....I guess I'm trying to give a realistic view of the seriousness of Andrew's condition. What I'm not trying to do is cause anyone to lose hope, to pass along any sense of frustration I might feel, or to ruin anyone's day. We appreciate everyone's well wishes and positive thoughts, but I want to continue to be realistic about the hurdles he still needs to overcome. He's in the right place and getting the right care, maximizing his chances for success....but in the end, it's going to be up to his anatomy, his drive, and his will to survive.